Quick recap
The group discussed preparations for an upcoming State Neural Society leadership roundtable and a meeting with legislators, focusing on key issues such as the Epilepsy Transportation Act and reimbursement rates. They planned the conference agenda, including speaker arrangements and timing, and addressed logistical concerns for the Capitol visit. The team also explored advocacy ideas for epilepsy patients, such as free public transportation passes, and finalized details for their upcoming meetings and events.
Next steps
- Selim to email legislators asking about maximum number of visitors preferred for meetings.
- Selim to add "Senator" title to Richard Pan's name on the conference agenda.
- Dorian to update the conference agenda with Senator Richard Pan's correct title.
- Joanna to prepare a 5-minute talk on transportation costs and epilepsy patients for the conference.
- Selim to distribute the legislative priorities document on social media and the CNS website.
- Selim to confirm with Priscilla about Dr. Richard Pan's presentation title and content.
- Joanna to check with YAWE representatives about current free transportation pass policies for disabled individuals.
- Selim to create meeting agendas for future meetings.
- Selim to inform Dorian about website content to post.
- All attendees to review the folder content email sent on April 19th at 8:15 PM.
- All attendees to prepare for May 1st Capitol visit, including reviewing talking points and group assignments.
Summary
State Neural Society Leadership Roundtable
The group discusses the upcoming State Neural Society leadership roundtable and a recent email from Grant Naiver about Medicare contractor advisory committees. Stella emphasizes the importance of getting involved in these committees to have a say in reimbursement rates. The group also addresses some communication issues, with Robert and Steve not receiving the email in question. They briefly touch on the upcoming conference agenda, which is scheduled for May 1st, and Selim mentions they are one week away from the event.
Epilepsy Transportation Act Meeting Discussion
Selim announces a meeting at the Citizen Hotel's Grange restaurant from 6 to 8 PM to discuss final meeting groups for May 1st. The group plans to present three issues, with a focus on the Epilepsy Transportation Act, as the first two issues have already passed. Stella suggests including Young Adults with Epilepsy to discuss transportation challenges, while Dr. Rosenthal and Stella will share patient experiences. The team aims to gauge enthusiasm from legislators for potential future legislation without making direct requests.
Logistics for Legislative Meeting Discussion
The group discusses logistics for an upcoming meeting with legislators or their staffers. They agree to have three main issues presented by designated speakers, with other attendees introducing themselves briefly. Stella suggests limiting each issue to 7 minutes, leaving 9 minutes for new participants. There is debate about how to handle potentially larger groups, given space constraints in legislative offices. They decide to confirm attendance numbers with the offices beforehand and prepare a list of attendees' names. The group emphasizes the importance of being concise and allowing everyone to participate appropriately.
Legislator Meeting Preparation and Agenda Review
Selim shares a document containing information about legislators and their offices for upcoming meetings. The document includes committee memberships, relevant bills, and district information. Selim also presents a double-sided handout about the organization, main issues, letters of support, and resolutions. The group discusses the status of resolutions submitted to CMA and agrees to post the meeting information on their website and social media to attract attendees. They also plan to review the May 1st agenda.
Conference Agenda and Speaker Arrangements
The group discusses the upcoming conference agenda, focusing on speaker arrangements and timing. They confirm Stuart Thompson's role in presenting legislation updates and clarify confusion about his identity. The agenda includes talks on California lawmaking, CMA collaboration, and experiences from a DC trip. Stella emphasizes the importance of preparing attendees for the afternoon Capitol visit. The group also discusses the inclusion of Senator Richard Pan, ensuring his title is correctly displayed. Joanna requests to speak briefly about financial aspects of job loss and driving restrictions for epilepsy patients, which Stella suggests incorporating into the panel discussion.
Epilepsy Patients' Hidden Driving Costs
The group discusses the hidden costs of driving and how epilepsy patients who lose their driver's licenses still pay for road infrastructure through taxes and mortgages without benefiting from it. Joanna suggests advocating for free bus and train passes for epilepsy patients as compensation. The conversation touches on the dangers of epilepsy patients driving illegally, with Joanna sharing stories of fatal accidents. The group also finalizes plans for an upcoming meeting to prepare for a Capitol visit, discussing expected attendees and logistics.
